I just want to be me

February 24, 2019

There are so many big, obvious ways that chronic illness can stop us from doing the things that make us feel like ourselves. Like not being able to work or having to give up a favorite form of exercise. But then there are the smaller things that most people don’t think about. And lately those have been bugging the hell out of me.

Don’t get me wrong. Not being able to work really sucks. And I should have a dog. I adore dogs. I dog sit a lot. And yet, I can’t manage having a dog every day, so no dog for me. And yeah, that sucks. Then there are things like no longer being able to dance. I miss that. And I wonder if I get married one day, will I not even be able to dance at my own wedding? That idea is so sad that I don’t like to think about it, and get it comes to mind anyway. Then again, will I even be able to have a big wedding? My guess is that my adrenals wouldn’t be able to manage that. Those are big things. Then there are smaller things.

Like I was telling a friend about how I hadn’t kissed anyone in 6 months. He suggested that if I’m on a date with someone I like then I should just go for it. But I pointed out the big problem: gluten. I can’t kiss someone who has eaten or drunk gluten. Or who is wearing lipstick or chapstick that might have gluten in it. So I have to tell them, which can be awkward on a first or second date. Like, there was the woman I mentioned it to on the first date. She was all done, with nice clothes, makeup, lipstick. On our second date she was dressed up with nice clothes and makeup, but no lipstick. And when we ate dinner, she ordered hers gluten-free also. Ah hah! Clues! And yes, we kissed that night. More recently I went out with someone and managed to bring it up. But then he ate gluten with dinner anyway. So obviously, no kissing there. I used to make the first move all the time. In fact, the first few people I kissed I had made the first move. I can’t do that anymore, not unless I know they are gluten-free. And that totally sucks. I can’t simply be me.

And there’s the money thing. I want to try and earn some money. Not only does my health not allow me to do much, but even when I can work a little bit, there’s the issue that my government benefits prevent me from earning a little money. I need to either earn enough to get off of benefits, or earn nothing at all. Because if I earn $1000, I will keep about $250 and the rest will get eaten up by a reduction in benefits. And that sucks.

I want to play with the kids in my life. I am auntie to 11 wonderful kids, and I’m too tired to do much with them. I have managed to host a couple of sleepovers, but even those were exhausting. I want to babysit more, chase after them, take them for outings. And it hurts that I can’t do that.

There’s a list of projects sitting next to me. Things I really want to do, if only I could manage to do them. If only I had more good hours in the day. These are the things that make me feel like me. I do enough to hold onto my sense of self, but there’s so much more I want to do. There’s so much my health won’t allow me to do.

I think about the kinds of things I have done over the years, back when I was healthier. I think about the kinds of things I would like to do now. I want to go out for drinks with friends in the evening, go out dancing, ride a bicycle. But mostly I want to act naturally, follow my instincts, and just be myself. And I find it incredibly frustrating that I can’t do that basic thing: just be me.

Leave a Comment » | Expectations, Frustration, Limitations, Rants | Permalink
Posted by chronicrants

Panic, thyroid, and medications

January 24, 2019

The thing about thyroid hormones is that they are needed for every part of the body to function. When you look at the list of hundreds of hypothyroid symptoms, you can see exactly what I mean. We need thyroid hormones.

It took too long for my hypothyroidism to be diagnosed. I am certain that the years-long delay in diagnosis and treatment led to some of the long-term damage to my body. Eventually I was diagnosed and put on medication.

Nine years later I did my own research and realized a lot of my ongoing health issues were untreated thyroid symptoms. I switched to a different class of medications altogether called Natural Dessicated Thyroid (NDT.) Instead of synthetic, human-made hormones, I was no taking pills formed from pig thyroid. You see, pigs produce the same thyroid hormones as humans, and in similar proportions. Many hypothyroid patients see huge improvement on these medications. Eventually I even got my father to switch to NDT and he also found improvement.

Things went well until several months ago. After years on Nature-throid I was suddenly hypothyroid again. What the hell?! I read on a hypothyroid blog that a lot of Nature-throid patients had seen a resurgence of symptoms since they changed their manufacturing process last year. At the time they swore they weren’t making any changes other than switching to a bigger facility. We’re now learning that there were changes to the ingredients after all, and that these were having unintended consequences for many patients.

I spoke to my doctor, who gladly wrote me a prescription for another NDT called NP Thyroid. But when I called the company that makes NP Thyroid I learned that it contains cornstarch. I react badly to corn. This would be a tiny amount but even so, I would eventually have issues with it. So we turned to compound medications.

The compound pharmacy is horrible. I won’t detail the issues now, but they suck at filling a prescription. I should have had this prescription last week but they keep having delays. My old Nature-throid prescription may not work well but it’s better than nothing so I figured I better get a refill, since the new compound wouldn’t be ready before I ran out of medication.

And then I got the call: Nature-throid is back-ordered until March. They don’t know why. No one has it. I asked around and learned more. The raw ingredients are back-ordered so it’s not just Nature-throid but all NDT medications! I even called a different compounding pharmacy and they said they can’t get their hands on it either.

SHIT!!!

So now I’m panicking, because I need my thyroid medication! And remember how I said thyroid hormones effect all parts of the body? Well, they affect mood, too. I have been more emotional lately due to being in a hypothyroid state. So while the issues with the compounding pharmacy are rightly upsetting me, I am getting even more upset than I usually would. I don’t have the capacity to properly react to things right now. This means I’m extra stressed out.

And ironically, the thing that is currently causing me the most stress is my inability to get my hands on the medication that would fix the problem that is causing me to be so emotional.

There aren’t a lot of options here, and things could get very bad. If I can’t get more NDT (I’m cleaning out every pharmacy that I can right now) then I will have to go back to synthetic medications. But those probably contain corn in the fillers and might not even be gluten-free. Not to mention, they simply don’t work as well as NDT. There’s a good reason I stopped taking them. But my thyroid can’t produce enough hormones on its own, so what choice do I have?

For any of you who take NDT, stock up now! Get extra refills if you can. Because the next few months could be rough for anyone with hypothyroid who takes these necessary, life-saving medications. And if you know anything about why this back-order is happening, please comment below or email me at msrants at gmail dot come because I would love to know.

Good luck to all of us. Let’s hope they bring our medication back soon. Because our lives depend on it.

3 Comments | Frustration, Healthcare, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

What is left to eat?

January 15, 2019

Any of you with complicated food restrictions will totally understand. Sometimes it feels like nothing is safe. Like the world is full of food landmines.

Seven years ago I figured out that gluten was a problem for me. Over the next 2 years I figured out a bunch of other foods I had to limit or eliminate. As my leaky gut slowly healed, I was able to bring back some of those foods, while acknowledging that others are gone forever.

For the most part, I don’t mind giving up these foods. I can deal with never eating gluten or corn again. Yes, popcorn used to be one of my favorite snacks. But it’s worth it if it means no longer feeling so sick! So in theory, things were good.

Groceries

Over the years, I have slowly figured out many places where I was getting trace amounts of gluten, and as I eliminated them, I felt better. These were things like sunscreen, moisturizer, lemon juice concentrate, and kissing my then-boyfriend. Some were easier than others to avoid. Let’s be honest, dating gets a lot harder when you have to tell someone at dinner on a second date that you can’t kiss them if they eat gluten – and you don’t even know yet if they were planning to kiss you!

Things were going ok overall until recently. Something is wrong. So far my doctors have thrown around ideas ranging from mitochondrial disease to some sort of yet-unnamed chronic infection to weakened adrenals that aren’t responding to the current treatment. I’m going to see new specialists. But I have also begun to wonder about what I’m putting into my body.

You see, my thyroid med isn’t doing the trick anymore and I want to switch brands, as many patients have recently had to do. The new one is gluten-free, but then just as I was about to get it from the pharmacy it occurred to me that it could have corn in it. It turns out, it does. Hmm. I asked my naturopath what she thought. She said it might be fine at first, but eventually it would probably build up in my body and cause problems. That makes sense. So I’m going to start a compounded medication next week instead.

But then I realized that I hadn’t checked for corn in my current thyroid medication since the manufacturing process was changed last year. And sure enough, it has an ingredient that might have been derived from corn. Yet I still have to take it until the new compounded medication is ready. Every day, I take it knowing that it could be making me sicker, but that I also need it to survive.

Then I looked some more. My vitamin C contains cellulose. So do a few of my other supplements. Huh.

So now I’m wondering if my malaise, fatigue, and brain fog could be from too much corn exposure. I know that small amounts of corn syrup in ketchup, for example, causes a problem for me. So this might be it!

But then just last week I was reminded of the many ways that Celiac Disease symptoms can appear that aren’t necessarily gastrointestinal. And at the same time I learned about some other places where I could be getting trace amounts of gluten exposure that I hadn’t considered before. These are harder to detect, like particles in the air when I’m in the home of someone who has recently baked with wheat flour, or produce in the grocery store that has gluten on it because another customer was touching it. How on Earth can I avoid those? I want a gluten detection service dog (yes, that’s a thing! And they are amazing!) but I am not healthy enough to care for a dog as a pet right now, sadly, much less to train a service dog.

So maybe I will take my new thyroid med and feel better and not worry about this other stuff. Except, even though some symptoms got a lot worse recently, there were issues before, also. So something else is going on. And while I am willing to try a new prescription for adrenal issues and to see the infectious disease specialist, wouldn’t it make the most sense to first eliminate all sources of the foods that I *know* can cause problems for me?

The problem is, I found a list of places where corn can be found, and it’s intimidating. Many of these are common (vinegar) or often found in gluten free foods (xantham gum.) I don’t know how careful I have to be, either. Do I have to avoid honey just in case the bees were fed high glucose corn syrup? If this were a gluten issue I would say yes, but for corn? Am I sensitive enough to need that level of scrutiny?

So now a lot of foods and medications I thought were Celiac-safe might not be and might contain corn that I didn’t know about, produce could be contaminated by other shoppers, gluten might be in the air, and no one knows what’s really safe and what isn’t. Ahhh!

It’s no wonder I’m stressed out about food. It’s no wonder I wish I could just take a safe nutritional supplement and never eat again. Food is a necessity in life, but it feels like a danger, too. Yes, I have to make sure my shampoo is both gluten-free and corn-free and that’s a real pain in the butt to do. Yes, I can’t wear the kinds of lipsticks I like anymore and it totally sucks. Those are emotionally hurtful in different ways. But food is something I can’t ignore. I can say I’ll deal with the lipstick issue another time, but food can’t wait that long. And that – how much I need that thing that has so much potential to hurt me – might just be the most frustrating part of all.

Unfortunately, my insurance will not cover a visit to a nutritionist, and I don’t know how much that would help me anyway. But I would love to hear from others who deal with this. If you have Celiac Disease or corn intolerence, please please please comment below and tell me how you deal with all of this, offer suggestions, or just let me know I’m not alone. It helps so much!

4 Comments | Decisions, Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Isolation, Limitations, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

Goodbye food stamps

November 26, 2018

Edit 11/27/18: I must apologize to all of you wonderful readers for the errors in the original version of this post. As it turns out, the income limit for food stamps was not cut in half. The person on the phone didn’t know what they were talking about and the appropriate information was missing from their web site (both of these issues have been reported.) So that part is good!

However, I have still lost my benefits for now. The reason is that in determining the income limit, medical deductions are not counted. WTF?!?! My income had gone up, and I am now $20 over the limit. Just $20!!! However, my income has since gone down again, so I can resubmit paperwork to get my benefits reinstated. It’s a lot of effort, but worth it.

But think about how hard it was to learn this. I got a letter with misinformation. I spent 45 minutes on hold to speak with someone who gave more misinformation. I spent the night thinking my benefits were cut off. Then this morning someone called me back and explained it all. Why wasn’t that explanation put in the original letter?! The system is broken in so many ways. Not to mention the part where I lose $172 every month in benefits because my income is $20 too high. If they want people to get off benefits, this isn’t the way to do it, because this just encourages people to earn less so they don’t fall off the benefits cliff! Now back to the original post….

Benefits in the U.S. (and many other places) are majorly screwed up. Today I’ll tell you how I lost my food benefits, which I just learned about a few minutes ago.

When I first became disabled, I wasn’t eligible for the SNAP program (formerly called food stamps) because my assets were too high – meaning I had too much money in the bank. But then they changed that, and I was able to sign up. For 4 years I have received money every month to buy food.

The limits are strict. I can only buy certain kinds of food – nothing from the bakery, for example. And only food – no soap or toothpaste or toilet paper. Still, it helps a lot!

Until this year, I was getting the maximum amount for a single person in Massachusetts. It didn’t cover everything, which was worrisome. I’m small (around 125 pounds) and sedentary. How would someone bigger and more active manage on that small amount? Luckily for me, I have savings, so I used that to make up the difference. Friends of mine went to food pantries. Sucky, but that’s our system.

Earlier this year my benefits were lowered by $20. That sucked, but I knew it would go back next year when I filed my 2018 taxes, showing less income. It still surprised me that with my low income I wasn’t getting the maximum anymore. Again, a very messed up system.

And then yesterday I got a letter saying my benefits were getting cancelled. Part of the reason had to do with me not being disabled. Of course it was a weekend, so I had to wait. In the meantime, I did some research. New guidelines came out on October 1, but even so, I should qualify. So today I called. After 45 minutes on hold, I got someone. She didn’t know much and I had to keep correcting her. Finally, well over an hour after I’d called, it was 5pm – time to quit. She said she or her supervisor would call me back tomorrow. But I’d learned one thing: the income limit she used was half of what I was seeing online. I said that, and she couldn’t explain it. So after we hung up, I did more research.

In many states, there’s no asset limit, but in Massachusetts there is. Here’s how it works: if you’re not disabled, there’s an asset limit (about $2000.) If you are disabled, then there’s a higher asset limit (about $3350) but only if you earn more than a certain amount. If you earn under that amount, you can have any assets you want. If you earn over that amount, there’s an asset cap. A house doesn’t count. Cars don’t count. But money in the bank does count. I have enough in the bank to cause a problem if they look at my assets, but my income was always low enough that it wasn’t an issue.

And I’m glad for that money in the bank! It’s there for emergencies. It pays for medical expenses when there’s a month where they cost more. It will pay for my new car when my current car dies. It pays for a dinner out with friends once a month or a new sweater or two from the consignment shop. It’s what kept me from having to move in with my parents while I waited for over 2 years for SSDI to come through. I worked my ass off for that money in the bank. I spent my career working in nonprofit, which as we all know, doesn’t pay very well. And I was living in Boston, one of the most expensive parts of the country. Saving that money was NOT easy! I cut back on a lot of things to save that money. As my friend Rob said to me a few minutes ago: “You’re being punished for doing everything right except being able bodied.”

Because now that money in the bank counts against me.  But it shouldn’t.

You see, until October 1, the income limit was 200% of the Federal Poverty Level (FPL.) That comes out to $2023. That’s a tiny sum in this part of Massachusetts. Especially for someone who is disabled who could easily spend hundreds every month in health expenses. I was under that amount, so my assets were irrelevant. Then on October 1 they changed the income limit to 100% FPL. That comes out to $1012!

Think about that for a minute. In an area where a 1 bedroom apartment in lousy shape will cost at least $800 per month, the income limit is $1012. So if you earn $1015 and pay $800 for your apartment while you’re on a waiting list for Section 8 housing, you now have $215 to pay for food, medical expenses, transportation, and anything else in your life. It just can’t be done. So you have to dip into your savings. Let’s say your assets are just a bit over the limit, around $4000. How long do you think that will last you? A year if you’re lucky? Probably less. At that point you can now get on benefits. And if you have an problems where you need savings, you have spent them all and you’re now entirely fucked.

Or maybe you earn more. Maybe you earn $2000 and you have $10,000 in the bank. That’s plenty of money, right? Not really. It’s hard to live on $2000 in this area if you’re able-bodied. If you’re disabled, it’s not enough. You’ll have to take money out of savings each month. As soon as you have to pay for a car repair or two, or a couple of large medical expenses, your savings will be gone.

There’s no perfect answer. I get that. But to cut the income limit in half is cruel. To do so without warning anyone is heartless. To send out a form letter that doesn’t explain any of this and just cut off people’s benefits is both.

You know that safety net everyone is always counting on? Watch out, because the holes just got even bigger.

Leave a Comment » | Frustration, Politics, Rants | Permalink
Posted by chronicrants

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